United Brachial Plexus Network, Inc.

I had my auto accident 1/2/07. My skin graft was in March - very successful. Nerve graft was done in July. I tried to return to work in Oct but could not do it. Lost my perfect job.

Feb was unbelievable pain. It was followed by 6 weeks of feeling good. That was interrupted by 24/7 pain. Sometimes it just hurts. Other times the different pains are excruciating. I have tingling, burning, contracting, rolling, shocks, aching,throbbing etc. types of pain. Most of the time combinations of several different ones at a time. I'm on 100 mg Lyrica 3x's daily, 10mgs Methadone 3x's daily, 10 mgs Baclofen 3x's daily & Dilaudid 2-4 mgs every 4 hours as needed.

My elbow started to move outward when laying on a table and a tiny amount inward on the table. I can not move it at all when fitting gravity. There is some movement when I'm having spasms. My pain is mostly caused by spasms. The more severe the spasms, the greater the pain.

I am being considered for Spinal Cord Stimulation. It will probably take place in July. I'm just wondering if I'm really wasting my time with all the therapy I'm going to and doing. My hand does not move. My Ulnar nerve is gone.

I'm in pain all the time. What am I really gaining in keeping an arm that does not work. I have no feeling from the elbow down. My bicep area has no feeling. Would I be better off amputating and having a prosthetic that might be able to do something. I'm in a sling all the time carrying an arm that does not work.

I just want to get my life back. Right now my life is consumed by an arm that does not work. Has anyone had their arm amputated and found that was the right decision to make and why did it take so long to make the decision?

Thanks for your input.
Janelle

Janelle I am sorry to learn you are going through hell right now and that you've lost your job. That had to be tough because it was something you were tied to physically and mentally. It probably isn't the best thing for me to advise you on anything because my own life is in the crapper. Keep those you love close and those who love you closer. I know I've declared my receipe of meds somewhere along the lines and even still my pain is not diminished but controlled...somewhat. I am able to bend my elbow some and flap my hand back and forth but when I do either it hurts like hell. I tell you this because I believe it's progress without structured therapy and I'm celebrating my third anniversary this weekend. I think I'll take my arm out for a steak, thinly sliced by the cook thank you very much. Afterwards maybe I'll take it for a drive in the...no wait $4.00 a gallon??? are you kidding me??? I'm in Texas for crisesake don't you think of oil when you hear TEXAS??? Jeeze who are we kidding? Really while we sit and ponder amputation we're getting SCA-rooed up the...

Seriously I've been considering this myself.

'I'm in pain all the time. What am I really gaining in keeping an arm that does not work. I have no feeling from the elbow down. My bicep area has no feeling. Would I be better off amputating and having a prosthetic that might be able to do something. I'm in a sling all the time carrying an arm that does not work.'

I'm kinda concerned about phantom pain and if that then what would it all be worth? I'm finding it increasingly more difficult to think about since my son will be 18 in Sept. and is free to leave and have a life. Which I myself feel I've had already and am good to go...to the other side. My luck I'll be stuck like this for another few decades. That sucks! There are only two options, live with it or don't. Period. That is where I'm at.

After all you have been through and what you have recovered from Janelle I wish you didn't have to go through this. If only....
God knows I wish no woman suffer this plight.
I have no clue as to or even this spinal cord simulator works so I can't say yea or nay


I would rather talk than type because I still only use one finger.


Message was edited by: swhite1

Hi Scott,

I always love to read what you have to say. I think we are fairly close to being in the same physical condition.

You couldn't be more right about what the cost of losing my job has done to me. It is now apparent that the people I thought were friends were only business acquaintances. The only real friends I have are people that live in other states thousands of miles away from were I live. Those I hung with when I worked now will have nothing to do with me. What a shock to learn you actually don't have friends. I actually wrote emails to the business friends I thought I had asking if we were still friends and if not I will understand if I don't hear back from them. SURPRISE no email back. Sure is lonely to be home all day long and the only ones you hear from or see are family.

This accident has cost me not only my arm but friends, money, self esteem. Mike and I had our future planned with a stable retirement in mind only to now have it all torn away.

Phantom pain is something I'm concerned about if I decide to have the arm amputated but can it really be worse than the actual pain I have to deal with. Will I be able to return to work and start getting my life back. I just don't know what the right thing to do is.

The good news is I just got approved to have SCS (Spinal Cord Stimulation) done. The test will be done on 6/23/08. How I hope it works. Perhaps if this actually reduces my pain I will feel more like continuing the long slow process of physical therapy. Patience is one thing I have learned from this accident. I have no problem doing the work my arm needs. I just need to see some progress. Reduction in pain will help me be more patient.

I will let you know if SCS works for me. Keep you fingers crossed.
Janelle

Hello Janelle,

I am Gunnar, 37 from Mexico.
I had a motorcycle accident about 17 years ago.
Had a BPI in right arm. I lost use of the arm, for about the first year after the accident the pain was unberable too! I tried accupunture, it did help a lot with the pain. I had surgery in New Orleans... this helped get some sensitivity in arm, but mostly no movement back!
I, like you, have a usless arm on a sling!!

For what I read, your pain most be pretty bad if you are considering have your arm amputated! I too considered doing that at one point, but I have also heard that even people that have their arms amputated have this pain!! its all in the brain! otherwise how does it makje sense to have pain in a disconnected arm!??
I suggest that you try the accupunture, they stick needles in your arm, it did helped me a lot... ofcourse make sure they use only your needles!!

Hang in there!!

Gunnar

Thanks Gunnar,
I am having SCS (Spinal Cord Stimulation) Testing on 6/23/08. If this test is successful the permanent implantation will be done a few days to a week later. The success of this I'm sure will have a huge impact on how I feel about my arm. Phantom pain does concern me. I will talk to the doctor(s) about this before I do anything as permanent as amputation. I just can't see how phantom pain could be worse than the real pain. I have never had acupuncture. If SCS fails, I will talk to my doctor(s) about trying it. I have a friend with serious back issues that needs to have surgery done. He tried acupuncture but found no relief. He is waiting for Workman's Comp Insurance to approve his surgery. It has been a very long slow road for him to get surgery approved.

I'll let you know how the SCS does for me.

There is no doubt pain effects your view of everything. If it becomes controlled I expect to have a better outlook.

Thanks,
Janelle

Hi Janelle,

You're right--pain definitely changes your outlook!

I don't know if you've tried Nortriptyline (an antidepressant that works on the pain-receptors in the brain), but it made all the difference for me. It doesn't work for everyone, and takes a couple weeks to kick in, but it's worth a try.

Then about 2 years ago, my pain magically died down about 80% (I've lived with TBPI about 11 yrs). It still comes back bigger than ever when I'm sick or stressed, but what a difference. I think exercise (lots of seratonin released), acupuncture & massage have helped a lot.

I've never thought seriously about amputation since I have avulsed nerves, and wouldn't benefit from a prosthesis, and because I heard it didn't always help with the pain.

But I wanted you to know there is hope. Keep trying different things, and you'll most likely find a combination that makes things bearable. They keep discovering new drugs and have new ideas all the time.

Take care,

Heddi